I have posted periodically about my medication being amended by my Dr against my wishes. It has taken a month for them to reply to my email of complaint. Is there anyone who can assist me respond to this part of the email please?
‘We continue to disagree about the relative roles of TSH and T3/T4 levels in thyroid monitoring. Being on T3 does not automatically make your TSH undetectable. Hypothyroidism secondary to Hashimito's thyroiditis does not make your TSH undetectable in itself. T3 and T4 vary through the day and depend on when you took your thyroid tablets. T3 and T4 are the 'snapshot' thyroid markers, whereas TSH is a less volatile marker. T3 in particular, with a shorter half-life, wil vary greatly. The combination of the peak from the T3 tablet, and then a peak in T3 from the T4 tablet (which as you know converts into T3 in all but a few individuals), along with any residual thyroid function you have, makes it hard to interpret. We absolutely agree that the dosing, and TSH interpretation, should take symptoms into account, but for us this applies with a TSH that is at least detectable. We would, as outlined before, be happy for the TSH to be below the recommended range fi you felt better with it running lower (as long as it is detectable). Running an undetectable TSH si essentially making yourself artificially hyperthyroid, with the associated risks. Inote your comment about naturally occurring hyperthyroidism being more risky than overtreatment, lam not aware of any reliable research into this to date.
Neither the British Thyroid Association, the European Thyroid Association or the American Thyroid Association conclude there si any convincing evidence ni favour of using T3/T4 combination treatment at al (apart from those few who can't convert T4 to 3). We have continued to prescribe your T3 despite this, which to me demonstrates that we are trying to work with your wishes and symptoms for the management of your thyroid symptoms.
The consensus statement on the BTF website by Ahluwalia (Use of T3 in hypothyroidism, 2023) is a good summary of the current uncertainties ni the use of 3, and more generally of the issue of persistent symptoms despite thyroid treatment. The article on the NHS England website of August 2023 is also useful’
My TSH always reads <0.01 - has done for years - I take 20mcg of T3 and 125mcg of T4. The Dr reduced it to this as a result of this reading. I was on 20mcg of T3 and 150mcg of T4 where I felt ok. My FT3 and FT4 sit at around 70% when on 150mcg but she is not budging won’t put me back on the T4 where I feel most comfortable and I feel Like I have exhausted what to say back to her.
Could anyone help me word a response please
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D911
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She meddled because the TSH reading is undetectable and therefore thinks my meds need reducing. I paid privately to see an endo who added the T3 - I’m not in a financial position to revisit them.
This is an issue that comes up not infrequently and the answer is usually to go back to the T3 prescriber to get a letter to GP saying your results are OK. This worked for me although my TSH isn't fully supressed.
My GP prescribes the T3 - they have referred me to NHS endo but won’t change me meds back in the meantime - I need to pen a response as to what she has written
In a way your response will depend on what you aim to do next.
Reading what your GP is saying is that they would be OK with at least a detectable TSH but not a fully suppressed TSH which is something, but doesnt really help you.
Having been suppressed for years its likely to take many months, years, if it ever does budge from where it is now.
Most NHS Endo's won't accept a fully suppressed or even below range TSH so you're left with little choice other than to accept poorer health with a lower dose of Levo & T3 or move out of the NHS.
What about changing over to self sourced T3. Its much cheaper to source it yourself than go by a private Endo, plus you get control over your doseage. The other alternative is to try Roseway Labs, they have a prescriber who is very good and she can prescribe T4, T3 and NDT.
It'll cost more than sourcing it yourself but it will be cheaper than a private Endo. I use Roseway for non thyroid meds so if you want more info try posting for advice on prices.
I'm afraid that Jaydee is correct in that the NHS are very unlikely to be happy with a suppressed TSH and even though yours, mine and many other people's are suppressed and likely to remain that way, it doesnt stop them meddling and decreasing your dose.
The NHS doesnt understand that a suppressed TSH can be very slow to normalise and some never do. No matter how often they reduce your dose.
I am prescribed Cynomel here in France 30 tablets a month but when I needed more than that I buy Tiromel direct online in fact I have taken some this morning. They take about 3 weeks to arrive and cost about £25 for 100 tablets of 25 mcg.
I had an endocrinologist who felt the same way about TSH. Since they are highly educated medical professionals and we are mere stupid civilians (my friend the doctor said they are actually taught this in medical schools) there’s nothing to be gained from trying to reason with them.
What I did was suspend my daily protocol of thyroid hormone for several days before going in for the blood draw. I felt miserable the night before the lab visit but the highly trained medical professional felt confident with the resulting TSH of 1.1 when it posted to my record.
Problem solved.
I’ll bet if you skip three or four days you can produce a result that might get your preferred dose restored. Just an outside the box idea. I don’t give medical advice.
I do that ahead of every thyroid blood test at the gp, saves all the hassle as my tsh is always 0.02 if I do t. I test private for true readings frequently)
Its likely to take longer than a few days, FT4 and FT3 levels can respond quickly to dose changes but TSH is much slower. I carried out an experiment last winter. I was taking 200mcg of prescribed Levo.
I wanted to try and normalise my suppressed TSH and also see if I really needed Levo, so for about 4 weeks I dropped to 50mcgs. I had an NHS draw early December and although my FT4 was then 7 ( 12-22) and FT3 was 2.7 ( 3.1-6.8) my TSH had only risen to 0.33 ( 0.27-4.2) so my still low TSH wasnt reflecting my well below range frees.
I fully understand the temptation to try and manipulate the TSH levels as doctors are SO obsessed with it but if your TSH has been suppressed, especially for a long time it can take months to respond, if ever.
I’m so sorry @D911 . It’s so horrible to have so little control over our own health.
I agree with the others you’re unlikely to change the doctor’s mind with rational arguments: they have already made up their mind.
I don’t know if this would work, but in your position I would insist that the endo has set your medication. Do you have a letter of this? And that you feel uncomfortable with a GP ( less knowledgeable on thyroid) overruling the dosage. Call their rank! But you’re happy to see the endo for a review. ( Hopefully, waiting lists are really really long and you unfortunately aren’t available a lot and have to reschedule any dates they book in. You can also ask for a second opinion, so you get two shots.)
Alternatively, could you see a different GP? One who’s just happy to accept your previous endo’s advice. Again, if you have the letter from your private endo or can get one, take that with you.
I could list the private endo that I saw but it was years and years ago- he set the T3 - the NHS endo that I saw got sacked off sharpish when he told me he was only interested in a TSH reading but if I wanted to see him on a private prescription other blood results could be discussed. It’s so corrupt. I feel so angry - the Dr has manipulated what I have said in the letter I wrote to them - they have referred me to endo but won’t budge - I’m going g to respond and have it out in writing that she is detrimentally affecting my health by being ill informed
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